Hi, my name is Parveen! Grant funding for my grandson

Parveen

I would like to apply for some grant funding for my grandson Ismail, has De novo 12q24 31 Deletion, 21 Hydroxylase Deficiency, Congenital Adrenal Hypoplasia, Myocionic Epileptic Seizures,Autism Spectrum Disorder  and a number of other conditions ie, low sensory impairment, stiff muscle choking act. Ismail is very delayed developmentally.
He has increasing difficulties which fit within developmental profile of Autism Spectrum Disorder.
He has myocionic epileptic seizures which have not been managed up to today even tho his doctor has tried different medications, they seem to be getting worse as he is growing and he is on the highest recommend dose for his age as well as the harshest medication for his seizures.
He pouches food in his cheeks due to sensory oro-motor difficulties, which again fits a profile of Autism Spectrum Disorder.
He chokes without warning when eating his food due to sensory impairment caused by his Autism therefore has to be supervised when eating anything and he chokes on his saliva without warning.He has some increase tone in his left leg, also when he wakes up in the mornings he limps and hobbles on his leg for sometime.He only sleeps a few hours at a time in the night, therefore mother or father have to wake up when he wakes and go back to sleep when he goes back to sleep.Ismail is a child with very complex needs.He has NO understanding of danger to himself, to others or in his surroundings, Ismail needs a 1-1 at all times 24/7 and cannot be left alone even for a minute which is too long for him.Ismail has all his day to day living and personal care needs met by his mother, father and nan, he needs to be supervised at all times day and night. Since Ismail birth mum and dad have not had any time as they are dedicated to Ismail and take turns to look after him. Due to Ismail’s health conditions he needs a wet room and a bedroom/playroom/quite area were he can go as well as safety for Ismail and his little sister. We have got the ok from the city council for the support area but unfortunately we need more funding as the work will exceed city council funding limits so they have asked use to apply to charities for funding support, so this what I am trying to do for my grandson with the permission from his mum and dad. Life has been every difficult from the day Ismail has been born and is getting very hard as he is growing due to him hitting, kicking, slapping and so on. We really need the downstairs area adapted to Ismail’s needs please help us thanks.

Ross_Scope

Hello @Parveen

Welcome to the community, thanks for introducing yourself to us, along with your grandson. I'm sorry to hear about what your family is going through, but your determination to get the best suppport for your grandson is super and obvious to see. 

Charity grants are quite rare these days I'm sad to say, but there's no harm in asking. Scope doesn't offer financial assistance or grants, but we do have a grants checker tool that you might be interested in using. 

Do Ismail's parents receive all the benefits that they may be entitled to due to his condition, and are they receiving all the support they need from health professionals to manage his condition? Has there ever been any contact with social services about arranging a care plan for him?

chiarieds

Hi @Parveen - & welcome to the community. I'm sorry to read about all of Ismail's difficulties & can imagine it's tiring for his mum & dad. I hope you look into the above recommendations, & that you find some help.